An independent review set up to examine the controversial Liverpool Care
Pathway has uncovered far more fundamental failings in the way the NHS
treats the dying, its head has said.

Baroness Neuberger led a panel that called for the pathway to be abolished, and replaced with individual end-of-life care plan for each patient – a recommendation which has already been accepted by ministers.

NHS trusts will no longer be able to receive incentive payments for using any future schemes, and any decisions to stop life-prolonging treatment should be taken only by senior doctors, the crossbench peer recommended.

However, she said that her 10-strong panel had discovered far more substantial and shocking failings in the care of the dying, which went far beyond the concerns that prompted the review.

“What we have also exposed in this review is a range of far wider, fundamental problems with care for the dying – a lack of care and compassion, unavailability of suitably trained staff, no access to proper palliative care advice outside of nine to five Monday to Friday,” the report said.

Lady Neuberger said patients were being left “in considerable pain” and suffering distress and hallucinations without getting the help they needed because in most parts of the country, expert teams “shut up shop” at 5pm on a Friday.

Patients could not choose to die at times that suited the NHS, she said, and it made “no sense” that the care they needed was not available around the clock. “Some of what we uncovered was truly dreadful, especially for those patients whose condition deteriorated at the start of a bank holiday weekend, when consultants were off on holiday and junior doctors left in charge,” she told The Telegraph.

The review frequently uncovered accounts in which families were shouted at by nurses for trying to give water to desperately thirsty relatives, she said. Too many staff had misinterpreted guidance which in fact says that nutrition and hydration should be given for as long as possible.

Equally common were tales in which patients had been left to “get on with” dying – without their care being reviewed, or even observations taken.

The report described “serious concern” about the lack of staff to care for the dying, and their level of competence. “The review panel repeatedly heard stories of poor standards of basic care and a lack of staff and equipment over weekends and out of hours; this also prevented some people from being able to come home to die, as they wished. There were numerous accounts of no access to the palliative care teams outside office hours and at weekends, both in acute hospitals and in the community,” it found.

Decisions to place patients on the care pathway were being taken by the most junior inexperienced doctors, often in the middle of the night. Repeatedly, the panel — made up of medical, legal, ethical experts, and patient campaigners — heard accounts of relatives who left a patient who was able to talk to them, only to return and find that without warning, the patient was heavily sedated, and unable to eat or drink.

Lady Neuberger said the lack of compassion with which patients had been treated shocked the panel. “The same stories keep emerging of poor care, appalling communications and of a lack of attention or compassion,” she said.

“Among the worst stories were of people on the Liverpool Care Pathway for days, going into weeks, without communication or review or discussion; and also desperate stories of desperate people who are longing for a drink of water who were, through misunderstanding of the Liverpool Care Pathway and poor care, denied a drink.”

Dr Dennis Cox, chairman of the clinical sub group of the panel, added: “When we started to meet the families to discuss their stories we were genuinely shocked to hear what had been happening.”

The panel was disturbed that the end-of-life care regime was being used “as an excuse for poor-quality care”.

Lady Neuberger said the panel was so concerned by what it had encountered that it had agreed, at its own initiative, to continue reviewing the progress of the NHS until significant changes were made.

She said the group was suspicious that the treatment of the dying betrayed “a considerable amount of age discrimination” in the way the NHS dealt with the elderly, a finding that echoed the report of the public inquiry into the Mid Staffordshire Hospital Foundation trust.